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Nursing Ethics
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The Struggle for Dignity by People with Severe Functional Disabilities

Barbro Wadensten

Uppsala University, Uppsala, Sweden

Gerd Ahlström

Jönköping University, Jönköping, Sweden, gerd.ahlstrom{at}hhj.hj.se

The purpose of this study was to investigate what strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation. Qualitative interviews were carried out and subjected to qualitative latent content analysis. The main finding was expressed in terms of six subthemes: trying to keep a private sphere; striving to communicate; searching for possibilities; taking the initiative; striving to gain insight; and using one's temperament. These generated the overall theme: maintaining dignity in close relationships. This study contributes an understanding of the strategies used by people who are dependent on personal assistance. Future efforts in nursing must focus on supporting personal assistants with ethical knowledge and guidance in order that people with severe functional disabilities are empowered to achieve autonomy, integrity, influence and participation in their daily lives.

Key Words: autonomy • chronic disease • dignity • integrity • participation • personal assistants

Nursing Ethics, Vol. 16, No. 4, 453-465 (2009)
DOI: 10.1177/0969733009104609
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B. Wadensten and G. Ahlstrom
Ethical Values in Personal Assistance: Narratives of People with Disabilities
Nursing Ethics, November 1, 2009; 16(6): 759 - 774.
[Abstract] [PDF]